Backpacking with Spondyloarthritis: My trip through Europe

I was recently fortunate enough to go on a backpacking holiday around Europe with my friend. We planned to go away for 15 days starting in Dubrovnik, then up to Zagreb, onto Ljubljana with a day at Lake Bled, over to Budapest, up to Bratislava with a day in Vienna and finally onto Prague. All in all we travelled approximately 1000 miles, and we did it all by bus.

A rough plan of our route

I was a bit apprehensive about going away for this holiday. It would have been the first time my friend and I had travelled so far on our own, the first time we would have to negotiate travel across 6 different countries, and for me the first time I have backpacked. I had so many questions relating to the logistics of travelling this far for the first time, but also travelling this far for the first time with arthritis - should I take my Humira and Methotrexate injections with me? What rucksack would be the best for my back? What do I do if I flare while away? Will travel insurance be really expensive? These things were questions that needed answered before I felt comfortable going away.

Sorting the travel insurance was easier than I expected. This was the first time I was going away and wouldn't be covered by my parents' travel insurance, and was the first time going away on my own while taking biologics. I was worried it would make insurance really expensive, but actually I got a years worldwide insurance with winter sports included for just over £40! Not bad at all! I shopped around and looked at regular insurance companies as well as companies that specifically insure people with medical conditions and found a company that suited me best. I was surprised that none of the insurance questions about my arthritis asked if I was taking medications that could suppress my immune system. I was so surprised that I actually called the insurance company I used to make sure that I hadn't missed anything on the form. I was assured I had completed it correctly and they were more concerned about my level of mobility than medications I was taking. 

After I had my insurance sorted, I wanted to speak to my biologics nurse at the hospital as my holiday crossed two Humira injections and two methotrexate injections (though methotrexate is not strictly my biologics nurses responsibility). I was worried about storing Humira even though AbbVie (company that makes Humira) states that it can be left at room temperature for up to 14 days, but when you're travelling in hot countries, living in hostels with fridges that are shared with everyone in the hostel and living out of a backpack, how are you supposed to make sure you have stored Humira at the correct temperature? The same goes for methotrexate injections, although they can be stored at room temperature it shouldn't be stored at higher than 25 degrees Celsius... so how am I supposed to keep it safe in places where it is 30 degrees and higher? I explained all of my concerns to my biologics nurse who spoke to my consultant and together they decided that I could take Humira a day before I travelled and not take my next dose until the day I got back from my travels, and the same for Methotrexate. Phew!! That was one big worry off of my plate! [Disclaimer: I would not do that unless I had permission from my rheumatology team first, and if I go away on a similar holiday in the future, I will be having a similar conversation about the logistics of storing my meds. There ARE ways to travel with injectable meds].

My biologics nurse and I also discussed how to stay safe, I was encouraged not to drink water from fountains that didn't specifically say they had safe drinking water, and to be careful when eating food from street vendors if the food looked like it might not have been cooked right or if there were flies landing on the food, as a precaution to reduce the risk of getting any infections whilst away. We also briefly talked about flares and decided that I should take my NSAIDs with me while away just in case of a flare, even though Humira was controlling my joints enough without NSAIDs already. 

Then I had to think about what backpack would be appropriate to carry everything I needed and didn't hurt my back. I reached out to the National Ankylosing Spondylitis Society who put a post on Facebook asking for opinions, and the consensus was one that had a hip belt. Then I went out to a local DoE/mountaineering shop that had a selection of rucksacks with various designs to try. I finally settled on a bag with a detachable smaller rucksack and had both a hip and chest strap. I felt that this gave me quite a lot of support with the weight of the back and didn't hurt my joints once I had adjusted it so that most of the weight was on the hip/waist strap. I definitely think going to the shop and trying out a few different bags was worth it, then I could find one that was the most comfortable for me. 

In terms of the actual travel on flights over to Dubrovnik and back from Prague, I wasn't too concerned. I researched all the airports we were flying from and to before going away and found that none of the airports were that big and some only had one terminal, which meant that I felt I would be able to get around without enquiring about accessibility. The same went for the flights, I felt that my joints were good enough that I didn't need to book an aisle seat and I could leave those free for someone who might have needed them more than myself. The travel I was most concerned about were the long bus trips and the single overnight bus that we took between Dubrovnik and Zagreb. I wasn't sure how my joints would like spending the entire night in a sitting position but fortunately the toilet was broken on this bus, which meant we stopped regularly for toilet breaks, which was an opportunity to walk around. I decided that for most of the bus journeys the best way the pass the time was to catch up on some much needed sleep, which worked for the most part. But I think if I were to go again, I would take a travel pillow with me as my neck did bother me while away and make sure that I get up for a stretch whenever it is safe to do so.

All in all, the holiday was excellent and my arthritis was really well behaved. There were some days that we were walking 31,000 steps up and down steep hills, which would have been really difficult for me if I hadn't been on an appropriate treatment plan. Nevertheless, we tried to incorporate rest breaks into our day by making a rough outline of what we wanted to do and taking our books with us so that if we found a nice spot in the shade, we could have a break and relax. I think a big factor in my arthritis not flaring was that we considered how to get from the bus stops to the hotels and selected our hostels based on their reviews and the length of walk from where our bus was dropping us off. This meant that we were often not walking longer than 30 minutes with our heavy rucksacks, which I think contributed to how well my joints felt while we were away. 

I am planning some posts on going to uni with arthritis, going on nights out with arthritis and starting work with arthritis in the near future.

Comments

  1. I used to backpack and once went out for 33 days. I did not have RA or spondylitis in those days, but I did have T1 diabetes. Your remembrance made me think back on those days so long ago. I am certain you had an excellent trip. Sounds fun.

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